An unparalled experienceIf you’ve been to one of our previous MTM-CNM Family Conferences, you know just how special they are. If you haven’t been yet, here is what some past attendees have said:

“There are no words to say how special this weekend was to us. I feel like a part of our family is now complete because we finally were able to see in person part of our extended family. This weekend was so good for our hearts and soul.” - Natalie, Cooper's mom

“We found our Utopia this weekend in a Best Western Plus in Bloomington, Minnesota at an MTM-CNM Family Conference.” - Hilary, Benjamin's mom

"It's been the most valuable opportunity for me personally and as a scientist to be able to come and learn from the boys and their families." - Dr. Barbara Smith, University of Florida

“I've waited 19 years to feel this way and I will try to never miss this again. To feel the belonging and to talk to others who understand the day to day of my life and "get it" is just great!!!” - Christiann, Jason's mom

“You will never know how much this conference meant to me and my family. It was the most incredible, healing, convalescent experience I have ever taken part in. To be face-to-face with the researchers and have the space to ask questions and hear presentations, was so wonderful and incredible. And of course our families! You gave us the opportunity to meet and share and laugh and cry!” - Maggie, Lincoln's mom

“We attended this conference two summers ago in Chicago Illinois and it was the best experience we ever had. Not only did we get to meet other families like ours our son got to meet other kids like him and feel normal for a change. We also got to listen to doctors and researchers who were studying our son's particular genetic disorder, so it was a great learning opportunity.” - Kimberly, Evan's mom

“It’s hard to describe how important being at the myotubular myopathy conference has been for us and all the other families here this weekend. Sure, there was lots of fascinating and groundbreaking medical research presented to the group as part of the rather remarkable progress that has been made towards a treatment for x-linked MTM. But most importantly for us, being at the conference was about connecting with, sharing, and learning from other families of kids born with MTM.” - Burke and Krista, Lucas's parents

The cost of the ConferenceWhile the value to families and researchers alike is priceless, overall the conference weekend costs us nearly $300 per person. The bulk of the cost of the conference comes from the hotel facilities, meeting space, catering and service, which translates to about $40 per person for each lunch and $60 per person for each dinner. Other expenses include kids activities and supplies and various other related services that make the conference special. This does not include the cost of hotel rooms which are paid by the attendees.

Who pays for it?We are extremely grateful to be lining up a number of generous corporate sponsors again for the 2017 MTM-CNM Family Conference. These are organizations who support our community and our efforts, and have some vested interest in helping to gather as many of us together in one place as possible. Like us, they seek to drive research forward towards effective treatments, and to support families in every stage of dealing with MTM/CNM. We couldn’t do this conference without them.

However, despite their generosity, sponsorships do not cover all the expenses of our conference. After all, this is a family conference, created by families, run by families, and with families at the heart of the whole experience. And we want all families to be able to participate, with as little direct cost to them as possible. Therefore, we make this heartfelt appeal:

We need your help!We are asking each family to help make this conference happen, by raising $500 or more for MTM-CNM Family Connection, by May 1st. If you can raise even more, that would be wonderful. If you can’t raise that much, we are grateful for whatever you can contribute - even if it is just words of support. The more money that we can raise as a community - as a family - the better we will be able to serve each other and continue to make a meaningful difference in the lives of those affected by myotubular and centronuclear myopathy. Let’s make April 2017 a month of amazing MTM-CNM fundraising! May 1st isn’t a hard deadline - our fundraising goes year-round - but we need to have our financial picture clear as we get closer to the conference in July.

If you have the ability to make a $500 or more donation yourself, that is of course welcome, but what we are really hoping for is active participation in some form of fundraising. This helps beyond just the dollars: it gets more people contributing, which means more people involved and aware and joining us in our mission.

How to get started?The simplest way that anyone can get involved in this fundraising is through our partnership with Crowdrise. Go to https://www.crowdrise.com/2017-mtm-cnm-family-conference and click “join the team” to set up your own profile page. It just takes a couple minutes! You can add your own photos and tell your own “story” if you wish, describing what the conference means to you. Then share your page with family and friends to request donations - easy! Just 20 donations of $25 each will get you to the $500 target. The donations are tax-deductible and transactions are handled securely by Crowdrise and Network for Good. If you need any help setting up your page, just ask!

There are a number of other ways to get involved with fundraising, from hosting online product sales (we’ve recently benefited from LuLaRoe, Pampered Chef, Thirty-One, Younique) to 5k runs, yard sales, lemonade stands, “jeans days”, race sponsorships, and whatever else you can think of! If you want to do something but aren’t sure what (or how), feel free to contact us via email or start up a discussion with other families in our closed Facebook Group.

If fundraising falls short of our goals, then we will have to cover more of the costs through registration fees, which we would rather not do since higher costs may make it difficult for some families to attend. So as an additional incentive, we will be offering $100 off registration for every $500 an individual or family raises.

Just do it!The most important thing is to be involved - however you are able. Families, this is our conference. We can’t wait to see you there, and we thank you for helping to make it happen. Let’s do this together!